Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

loosing faith in the hospital ....

34 replies

sadandnooptions · 12/09/2021 16:04

My boyfriend is 34 and has brittle asthma.
He is in hospital for the 4th time this year.
His last stay was 3 weeks ago.
His best peak flow is 300,today it's 160....yet they still want to discharge him tomorrow.
He is no further forward.
He is taking 6 steroids a day and they are trying to wean him off.
He has a nebs machine at home (they've told him only use when it's bad)
He is in hospital and they won't give him the nebs today as they want him out tomorrow and you need to be off the machine 24hours.

He is breathless when walking.
He has chest pain,feeling sick constantly and hot sweats.
They've told him it's just his asthma and they will play around with his meds.

He is sick of his life.
He feels like more is going on and they aren't listening.

Does anyone have any thoughts what could be going on here?
He is waiting to see the asthma doctor in the morning.
He can't continue this way ..every few weeks in hospital.
Then sent home.
I'm loosing my faith in them.

OP posts:
Original poster
sadandnooptions · 12/09/2021 16:05

His latest peak flow is now 150.

OP posts:
cereallover · 12/09/2021 16:17

Does he eat well and not smoke?

romdowa · 12/09/2021 16:23

Does he see a specialist in asthma? Do they have a longer term plan after they discharge him? With peak flows that low I'm shocked that they are weaning him off the steriods and refusing him the nebulizer. Might be worth contacting pals in the morning.

harasgmc · 12/09/2021 16:25

I'm so sorry to hear what you've both been going through.

Does your partner have a respiratory consultant? It's worth seeing if there any clinical trials he might be able to join.

One thing that's been a great support for me is asthma UK they have a fantastic service where you can get support and advice from their nurses. Do have a search online too. There is a fantastic community on Facebook with asthma UK where many of us find support from other sufferers.

MarieVanGoethem · 12/09/2021 16:56

Glad to see Asthma UK’s helpline has already been recommended - does he have a [team of] CNS[’] he’s able to contact for more detailed/personalised advice? Where’s his respiratory consultant in all this?

Presumably his nebuliser is only for salbutamol (&/or terbutaline) as he’s been told only to use it when things are bad? Not that that’s adequate guidance - what was the plan when the nebuliser was prescribed for him (& when was the plan last updated)? Asthma plans need to be detailed because otherwise they’re no use “bad” is a wholly subjective measure - he needs to know PF numbers &/or SATS measurements. He also needs to know what to do when - change up inhaler doses, start oral steroids, use his neb (& how many times he can do so before seeking help)…

It is really really important he have an up-to-date treatment plan, especially if he’s having an increasing number of exacerbations.

Is it only his peak flow they’re checking, or have they done proper lung function tests? (Or even just spirometry & checking his NO levels - latter can be done bedside & measures levels of inflammation in lungs.)

There are LOADS (well, relative to when I was a child/teen) of treatment options for severe asthma (including brittle asthma) now - xolair & the drugs that followed from it have been absolute game-changers. It sounds as if your boyfriend desperately needs a proper review. Full lung function tests are a bit tricky to organise in most places atm because they count as aerosol-generating (because people so often cough as a result of/during them), but the basics plus 3 minute walk should be doable pretty much instantly.

Original poster
sadandnooptions · 12/09/2021 17:27

No he has no consultant and he has had no checks.
All they do is give him steroids and that's it.
He is telling them he needs something else and getting fobbed off

OP posts:
Original poster
sadandnooptions · 12/09/2021 17:31

It turns out he shouldn't have even had the nebuliser at home.
The nurse only gave him 1 steroid this morning and he had to tell her he couldn't drop from 6 to 1 just like that

OP posts:
QuarantineQueen · 12/09/2021 17:36

Asthma UK and PALS. No way should they be withholding the nebuliser when he needs it. And why would they take him off the steroids when his peak flow is still dropping?
Either they just want the bed, or they want to keep him out of hospital because of the risk of him catching covid whilst there. If the former, that isn't good enough. If the latter, then it still isn't good enough without a better plan.
Kick up such a fuss (are you his next of kin?). You shouldn't have to, and he shouldn't have to but it's often the only way to get safe and appropriate care in the NHS these days.

DiscoGlitterBall · 12/09/2021 18:08

All the advice given is great, PALS and Asthma U.K. at 150 and dropping they should be looking at his meds not weaning him off.

Seriously at what point would they be suggesting he goes back into hospital? When it’s 0???

He needs to be stable before they let him home.

I always say I have controlled asthma - my nurse laughs and say no, you have asthma and it is a killer - respect it. Those medical staff need a head wobble.

Can he refuse to be discharged?

MatildaTheCat · 12/09/2021 18:15

Weekend care can be rubbish. Your DP will have a named consultant and he should obviously know who it is. He should absolutely refuse to be discharged without having been seen, assessed and have a plan from his consultant team, hopefully respiratory specialists.

I hope he gets the care he needs, you must be so worried.

Original poster
sadandnooptions · 12/09/2021 18:29

Thankyou everyone for your asthmauk/pals advice.
No his mum is next of kin.
The doctor yesterday said it's "only" asthma.
He can't even walk to the toilet without struggling to breathe plus the chest pain.

OP posts:
BobsBurgersisthebest · 12/09/2021 18:32

@cereallover

Does he eat well and not smoke?
This...
SpindleWhorl · 12/09/2021 18:33

Are you on Twitter? The CEO of our hospital is, and sees tweets. And yes to ringing PALS, complaining, and refusing to allow him to be discharged.

Also try and alert his GP to what's happening, if possible.

Original poster
sadandnooptions · 12/09/2021 18:35

@BobsBurgersisthebest no doesn't smoke.
Doesn't really drink.
He eats ok except for sometimes he will skip his breakfast

OP posts:
twig1234 · 12/09/2021 18:36

He's needs a referral to respiratory specialist. He is on Mart regime, montelukast? If so then biologic therapy may be needed if not controlled

Medstudent12 · 12/09/2021 18:40

I’m a doctor. If it’s the weekend likely to have been seen by a junior doctor only (like myself). Is he on a respiratory ward or gen med? Some bed manager will want the bed but if I was him I’d insist on seeing a respiratory consultant or at least registrar. Point out the increasing frequency of exacerbations and severity of his asthma (brittle asthma is very different from the regular kind!).

If they refuse threaten to speak to PALS. Guilt trip them, make sure they know you’re worried something terrible could happen if released too early. Don’t hold back. Sorry this has happened to you.

Suzi888 · 12/09/2021 18:42

I’d privately- if you can.

Suzi888 · 12/09/2021 18:43

*pay privately

ChequerBoard · 12/09/2021 18:48

Great advice from @Medstudent12 drop in phases like medical duty of care and explain that you want to sure that they are following safe discharge practices.

It's awful that you don't know which consultant he has admitted under. Likely to be whoever is on-take over the weekend and he will be transferred to the care of a respiratory consultant on Monday.

IAAP · 12/09/2021 18:50

Go to PALS now and ask to speak to the doctor on call -advocate for him -he can't -just say no -he needs to be seen and you are NOT discharging him. Make a fuss.

PinkiOcelot · 12/09/2021 18:51

He really needs to be under a respiratory physician. I would insist they ask for the on call respiratory consultant.
This really isn’t good enough. Get in touch with PALS/patient experience team.

cptartapp · 12/09/2021 18:53

Has he had a chest x ray?

Original poster
sadandnooptions · 12/09/2021 18:53

@Medstudent12 he is on the respiratory ward.
He has seen 2 different doctors (none today with being Sunday ) and all being v dismissive
I will deffo do this Thankyou
I would feel so much better if they were doing something.
The situation of him going in hospital then out in a day then back in a month is draining

OP posts:
Original poster
sadandnooptions · 12/09/2021 19:04

@cptartapp yeah he had a chest x ray
Never heard about it so assuming it's okay.
His heart rate is fast

OP posts:
LoveFall · 12/09/2021 19:10

I don't understand the issue of the nebulizer. I have one. I only use it if I am struggling and then only as prescribed. I really helps usually.

Maybe I am ignorant but telling him not to use it sounds like the same old response some health professionals have to chronic disease they can't easily fix. Just hoist yourself up by your bootstraps.

I am sorry this is happening. You need to really advocate and protest discharge without a good asthma care plan. Frequent hospitalization is a bad sign, not to mention a terrible use of resources.

💐💐💐